My name is Stacey Samuel-O'Brien and I have multiple sclerosis (MS).
I grew up in Trincity and at 19, I moved to Atlanta, Georgia, where I've lived ever since. Living in the US has its benefits, and I'm extremely grateful for everything that I've accomplished here, but I am 'Trini to the bone' and my navel string will always be tied to Trinidad.
This series is about how I navigate life between Trinidad and the US with MS.
In 2005, I was diagnosed with what I call 'my wretched disease.' It started simply enough. I woke up one morning in January and my eyebrow was twitching.
That did not concern me but, two weeks later, it had travelled down and I could feel the entire left side of my face twitching/writhing/vibrating. The sensation persisted 24/7 and I felt as if I was constantly sneering, because the twitching felt it was pulling up the left side of my lip. Interestingly, it was all happening under the surface of my skin, because I looked normal to anyone who saw me.
Finally, I gave in and went to my primary care physician in Atlanta, who referred me to a neurologist. The neurologist prescribed muscle relaxants to relieve the twitching and ordered an MRI.
After viewing my MRI, he told me that I'd either had multiple strokes or had multiple sclerosis; he'd need to run more tests to be completely sure.
'Funny' story about this is that there were times before when I'd feel a tingling in my arm and joke with my sister that I was having a stroke, and now here was this doctor saying that actually was quite possible.
The additional tests were a lumbar puncture (spinal tap) and a visual evoked potential test (a measurement of a person's response to visual stimulation). I endured the tests and waited for the results.
In the meantime, life went back to normal, because the muscle relaxants actually worked.
On May 19, I returned to the doctor to discuss the test results. He told me his official diagnosis was multiple sclerosis.
This was a disease about which I knew nothing, except that Richard Pryor had it, was in a wheelchair, and appeared to be dying. I was extremely bewildered.
Back in those days, I had relapsing-remitting MS (RRMS). In other words, symptoms appeared, stuck around for a few months, then completely disappeared and I'd go back to normal.
In fact, after the twitching eyebrow in 2005, the next MS 'incident' didn't occur until 2007. Between April and November that year, every day for about ten seconds at a time, multiple times a day, I'd experience double vision that was accompanied by stilted walking. It was all very odd and after finding nothing wrong with me, my neurologist concluded that it was the MS 'doing its thing.'
Then, one day, it stopped just as suddenly as it started!
My RRMS has since morphed into secondary progressive MS, which basically means that, instead of symptoms appearing and disappearing, I now experience consistent changes and decline in my nerves and motor skills.
I went from walking normally to using a cane (in 2008) to using a walker (in 2014
